research

RESEARCHThe Morgellons Research Foundation

“If you are a research scientist interested in conducting research into the etiology of Morgellons disease, please see theMRF Research Grant Program.

Current Research
Below is a list of the research at Clongen Laboratories, Oklahoma State University, and SUNY. Also included in this list are the findings from analyses performed by Jenny Haverty, Clinical Microbiologist; Forensic Scientist, Ron Pogue; and Lab Director, Mark Boese at the Tulsa Police Crime Lab, as well as new preliminary (Phase one) findings from a microbiologist in Massachusetts.

MRF Research Grant Program
The Morgellons Research Foundation (MRF) appreciates your interest in the MRF Research Grant Program. The MRF, which was founded in 2002, is dedicated to funding research efforts to find the cause of, and a cure for, Morgellons disease. The MRF also disseminates information about the illness, provides support to people with Morgellons disease, and has maintained a registry of people with the illness since its inception. The MRF recognizes that the understanding of complex diseases requires unbiased scientific research. It is only through committed research efforts and the open sharing of new information that we will understand the etiology and pathogenesis of this illness. The discovery of this information will allow researchers and clinicians to recommend appropriate diagnostic tests as well as appropriate medical treatment for patients with this illness. The MRF has funded thousands of dollars of research and is committed to funding additional research until all questions about this disease have been answered. We hope that our continued research initiatives provide incentives to scientists, give much-needed hope to individuals with Morgellons disease, and result in useful treatment information for clinicians. The ultimate goal of the MRF is a cure for Morgellons disease. Click here for the MRF Research Grant Program Packetin printable format.

What research has the MRF funded so far?
To date, our funding has been limited only by what we can afford. The MRF has received formal grant requests from six groups of scientists at three universities, two private microbiology laboratories, and one research institute. These requests total $581,600. We have been able to provide phase one or “start up” funding only (individual grants of under $5,000) to researchers at Oklahoma State University, California State University East Bay, the State University of NY Stonybrook, and a private microbiology laboratory in Massachusetts. We have covered related costs for collecting and shipping patient samples to researchers, and have paid for several thousand dollars worth of laboratory reagents (PCR Primers) to help advance Morgellons research. Additionally, the MRF has helped fund the collection and collation of Morgellons patient clinical laboratory data, as well as demographic, history and physical information from 25 Morgellons patients who were examined by two physicians. The information from the analysis of the clinical data will be shared with you when the final report of this data is complete.

We hope to fully fund as many new Morgellons disease research projects as possible, as well as to fully fund those scientists who we have provided initial funding so that they can devote more time to conducting this crucial research.

Why hasn’t more research been done?
The MRF was established in 2002. Our primary focus during the first several years was to raise public awareness of the disease. In the beginning, the foundation was responsible for taking a disease, which was unnamed and largely misunderstood, from obscurity into the world of science. The MRF was very successful in this endeavor. Thanks to the efforts of Ken Cowles, MRF media director, and individuals with the illness, Morgellons disease has been covered extensively in the media, including segments on CNN, NBC, ABC, and has received coverage in most of the major newspapers. These initial steps which, although slower than any of us would have liked, laid the foundation for the current scientific interest in the disease. Without public awareness of the disease, the scientists who have now expressed interest in conducting Morgellons research would not know about the disease, and there is the possibility that the Centers for Disease Control and Prevention would not be investigating this situation.

The MRF has received six formal research grant proposal requests totalling $581,600. These dedicated researchers, who work at three different universities, two private microbiology laboratories and one research institute, require funding to continue their investigations of Morgellons disease.

Focused scientific research has been limited to date, only due to lack of funds. Several researchers are volunteering their spare time to do this work and others have asked for minimal initial funding Since we have not been able to fully fund any researcher to date, no scientist has been able to fully devote all of his or her time to Morgellons research which has slowed research. We are most grateful to all of the researchers who are attempting to understand this illness. We appreciate each research group’s unique approach to the disease. We believe that the answers to this disease will be found as the result of the efforts of multiple researchers at different facilities each contributing their own perspectives, talents and resources.

What is the focus of the research at the Biomedical Institute that submitted a proposal to the MRF?
This research would focus on uncovering the differences in the blood of people with Morgellons and those who do not have the disease. The short term goal of the research is to identify markers that would allow clinicians to diagnose Morgellons disease. The long term goal of the research is aimed at using these markers to understand the cause of the disorder itself. The Biomedical Institute has sent a formal grant proposal to the MRF asking for $233,000 to fund this study.

What is the focus of the research at the Universities and the Private labs?
Research at several of the universities is focused on examining the chemical composition of the fibers and also examining them microscopically. In addition, DNA analysis is being performed on skin specimens and cultures are being performed. Environmental causes are also being investigated by one of the labs. These researchers have sent separate research grant proposals to the MRF individually asking for $25,000, $30,000, $46,600, $82,000 and $165,000. to fund these studies.

Where do the donations go?
The MRF is operated by an unpaid board of directors, officers, and volunteers who are working out of their homes, so that the bulk of our donations go to supporting research and raising awareness. The MRF has extremely minimal operating costs and the current Board of Directors has always paid for their own travel and related costs associated with Morgellons disease.

Has the MRF reached out to private foundations for research funding?
The MRF has reached out to several private foundations for funding. Unfortunately, so far, our efforts have been unsuccessful. It is difficult to receive support for a disease that is not yet recognized by the medical community, and seemingly only affects a relatively small number (12,000 registered families) of people. Once the disease is recognized, we believe that this type of research funding will become more available.

Why not just wait for the CDC?
Although we are encouraged by the CDC’s involvement, we realize that their planned epidemiological study is just an early step in a long process to find the cure for this disease. We hope to move quickly towards our goal of finding a cure by enlisting the help of multiple, highly motivated researchers. As with all serious, complex diseases, the work needed to find a cure involves efforts from multiple researchers. We will only accomplish this goal if researchers, both in and outside of government agencies, all work together as quickly as possible.

Note: We certainly respect the fact that not all researchers wish to have intense public attention, and we leave it up to the individual research group to decide whether to be public. We hope that people will understand that this is a decision left up to the individual research group.